Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

2017 Chat Room Transcripts

Topic: Open Forum  
DavidOhio   Good Morning GregF
GregF   Good morning David Happy New Year
DavidOhio   It is very cold here in Ohio but at least the sun is shining today, how about for you? Happy New Year!
GregF   Are you getting this cold spell up there
DavidOhio   You are in the Kansas area, right?
GregF   Its only 4 below here this morning. Yesterday morning the actual temp was 30 below with a wind chill of 49 below. I am in eastern Colorado
GregF   I was born and raised in Ks. but moved here 20 years ago. my brother is on this chat sometimes he is still in Ks
GregF   Good Morning Tom
DavidOhio   Compared with that we are having a heat wave here in Ohio, we were in the teens yesterday and came to near zero overnight..  The forecast for the coming week is to reach the 40s with rain.  It has been a very up and down winter so far.
DavidOhio   Good Morning Cousin TomK
GregF   Up and down here as well they are predicting 65 monday
DavidOhio   Good Morning Gary_KC
DavidOhio   GregF that kind of temp change is just brutal.  We were just commenting that the recent lower temps would not feel so  bad if it had not gotten well above the average temps recently.
Gary_KC   Good morning David, Greg and Tom.
GregF   Good morning Gary
DavidOhio   Have any of you taken time to read the clinical research report from Japan that was mentioned in the recent KDA monthly letter?
Gary_KC   It is very cold in Kansas too. We had snow about 2 inches.
GregF   Yes David the temp swing is hard on us here too Most of the winter has been warm then all at once we get this below 0 stuff
ronmoffett   Good morning everyone
GregF   Good Morning Ron
GregF   Do you guys have trouble typing when it is this cold
TomK   David I am scheduled to see a Dr. Goddard at Drake any Info on him.  I can no longer stand without my left leg collapsing!
Gary_KC   David, I have not read yet. Is it Anesthesia info?
DavidOhio   I glanced at it and saved a pdf file to my computer and plan to read the full report this week. The topic was breathing issues for KD men as compared with ALS men.
GregF   Tom Sorry to hear that Do you think the Dr. will give you a brace?
Gary_KC   GregF, Yes it is not easy to move fingers on keyboard.
ronmoffett   GregF - yes it gets cold and the fingers don't work as well. Its the most common complaint I here regarding KD.
GregF   It seems like I either don't hit the keys hard enough or I hit them several times
TomK   I used braces before so I am not sure but I do know my muscles in that leg are shot.
DavidOhio   TomK I am not familiar with Dr Goddard, have you checked the KD sight for mention of him?
TomK   No he was recommended by my Family Physician
DavidOhio    Good Morning Bruce
ronmoffett   GregF - you might want to check into another keyboard. Keyboards aren't all a like. The more money it is. The easier it is going to be to type because the keys will be tall. 
ronmoffett   Good morning Bruce
GregF   Ron I did buy an ergonomic keyboard and that has helped some 
ronmoffett   GregF - that was smart. Can't remember. Are you living in Colorado ?
GregF   Yes in the eastern part. The desert part
ronmoffett   I image it gets cold there. Like here in Illinois. 
GregF   Ron yes it does I was telling David earlier that yesterday it was -30 with a wind chill of -49
ronmoffett   Wow - that will certainly have an affect on KD. Didn't realize it got that cold there. 
DavidOhio   Hey Ron we will be up your way this week visiting our daughter and baby Nate.  Let me know what day(s) you might be available for a coffee break or lunch.  Monday to Thursday.  If this week does not work we have two more scheduled over the next 6 weeks.
GregF   Most of the time it doesn't. This morning we had a heat wave it was only -7
ronmoffett   David - Ok. Sounds good. I will check my work calendar and reach out to you. How is Nate doing and the parents ?
DavidOhio   The young parents and baby are all doing very well.  And they were able to travel to Lebanon to be with family for an extended Christmas stay
ronmoffett   How was everyone's holidays ? Any trips or New Years resolutions ?  
ronmoffett   Very Nice. Always nice when they travel to you.
TomK   So DAVID have you made plans for Your Grandson?
Gary_KC   Ron, I did not have a trip. I forgot to make the New Years resolutions. Thank you for asking us.
ronmoffett   Gary - I haven't made any resolutions either. I guess my one is to try and keep working another year if I can and my body can hold out.
DavidOhio   TomK other than to spoil little Nate as often as possible no other specific plans.  We already have three Chicago trips planned and I am sure we will find other excuses later this spring and summer
TomK   Do you fly or Drive to Chicago/
Gary_KC   Ron, sound great! I will think about it. Thank you for mentioning us.
DavidOhio   We drive I do not like to fly anymore.  Especially for such a short trip like Chicago.  In fact I think whenever we have time for a extended vacation we will also drive
ronmoffett   David - I don't like to fly either. How long is the drive to Chicago ?
DavidOhio   My resolution is to focus on sticking with my exercise routine even while traveling.  It seems harder to make time when we are traveling.  I had also dropped some activity and had not noticed any problem, but my therapist did and I resumed focus on my ankles since there was some weakness in them.
DavidOhio   It takes us between 7 and 8 hours but we stop for a meal and a several other times to get out and move around a little.  I get too stiff when I sit for hours at a time.
ronmoffett   David - sounds like a good resolution. I cant seem to be consistent in my workout routines. It helps me. But I just get side tracked. I am considering joining a fitness club to see if that will help me. 
DavidOhio   Ron do you perform some of the smart exercises that Bruce has loaded on the KD website?  I have been using a number of those along with others from my therapist for years and I am sure that is one of the reason I have retained my mobility.
JackJohnson   Hi Gang, Sorry I"m late
DavidOhio   Hi Jack glad you could join us.
ronmoffett   David - yes. its included in the routine I use along with exercises from when I was in PT and exercises I used to do when I was younger before the KD. I like to use the resistance bands the PT use. 
ronmoffett   Hello Jack. Welcome
ronmoffett   Jack - how is your son doing ?
DavidOhio   I agree the resistance bands are very helpful
Gary_KC   Have you guys read 2016 KDA Research Presentations in the KDA site? It is lots of good information for who did not attend the conference.
JackJohnson   son is doing well. Now that he has learned to get rest and reduce stress at work
ronmoffett   David - yes. When I was young and weighed in close to 220 weights were great to develop the muscles. Now that all my muscle mass is gone and I look like a skeleton. I find that's all I need. This is a tough disease 
DavidOhio   Gary I started to read the KD conference material thanks for the reminder.  A certain little boy arrived and grandbaby Nate has just been too enjoyable of a distraction
ronmoffett   Jack - glad to read this. I find that rest is important as well as keeping the stress down. What type of work does your son do ?
JackJohnson   He is a software developer
JackJohnson   My wife Jenny and I attended the KD Conference in San Diego.  We met some great people and learned a lot.  KDA has quite a family
ronmoffett   Gary - I started going through some of them. I need to go back and finish. I was very interested in the pain management topic since I struggle with a lot of pain.
DavidOhio   Jack I agree with Ron, finding a way to reduce job related stress is important.  Until I stopped working I had no idea just how stressful driving to and from work was.  In his line of work if they allow working from home he should try to take advantage of that opportunity.
ronmoffett   Jack - that can certainly be a stressful job. Glad he is managing the stress.
JackJohnson   Thats a good suggestion, David. I'll pass that on to him
JackJohnson   Your right, Ron, he was in bad shape before he discovered what he had.  Once he changed his habits things got a lot better. 
ronmoffett   David - that's a good suggestion - that has allowed me to continue to work. I couldn't drive to an office everyday. With this cold weather. It takes the energy right out of me
GregF   My office is only 200 yards from my house but in this weather it still takes quite a while to thaw out once I get here
DavidOhio   Jack has your son tried any of the smart exercises from the KD website?  We call them exercises but they are more like stretching and gently movements.  But they are very effective.
JackJohnson   Thanks for the suggestion, David.  I'll make sure he knows about them
DavidOhio   Jack what I did was print out copies of those exercises and use them as an introduction for my physical therapist and make sure she understood Bruce's principle of know what you can do and then never do more than 75% of that.  The key is to stimulate muscle not exhaust them 
ronmoffett   Men - anyone taking anything for there swallowing muscles. I have had a problem lately where when I try to drink some water my muscles of the throat closes shut and I spit the water out. Dr gave me Lorazepan if it won't open immediately. Was wondering if there was anything else.  
Gary_KC   Exercise is a great. Also we should cut sugar to maintain good health.
ronmoffett   Gary - I agree but cutting sugar is difficult for me. One of the few vices I have left.
JackJohnson   Amem to that
ronmoffett   Gary - whats the weather like now in KC ?
DavidOhio   Ron it sounds to me like you need to see a speech therapist and have a study done to understand what issues you have.  I have had that done twice in the last 6 plus years and both times I was able to learn certain exercises to help me recover some swallowing strength.  I still have trouble at times but much less frequently.
GregF   Got to go guys have a great month
DavidOhio   Take care GregF until next time be well
Gary_KC   We had about 2 inches snow the day before yesterday. It is a sunshine but it is about 16 degrees. I am waiting snow melt.
ronmoffett    David - good suggestion. I have never been to a speech pathologist. I am open to checking one out to see if it helps.  
JackJohnson   So long fellas.  Thanks for the good suggestions
Gary_KC   Bye Greg.
ronmoffett   Gary - your weather pattern is like here in Illinois. I thought you might have a little better weather.
DavidOhio   Ron that is another area where I think you should take the neck and throat exercises from our website to the pathologist and help them learn how to help you.
DavidOhio   Hope everyone has a great start to the new year and I  look forward to chatting with you all again next month.
ronmoffett   Yes - I don't do a lot of the throat exercises per se. But I should probably start and see If It gets better. 
ronmoffett   Its that time. I need to transition to some chores. Wishing everyone a great 2017. Be well
Gary_KC   It is a nice chat this morning. Have a nice weekend.
TomK   Have a great Weekend !